RAI

[Sylpops]

My latest blood tests came as tsh suppressed at 0.13 but t3 normal range at 5.3 and t4 at 14.5. taking carbimazole 5 most per day. Had appointment with endo Thurs 11th. He advised radio active iodine. I am at a loss!?! Any ideas?

Thnaks

[HLAB35]

Hello and welcome. My advice is that you have 100% proof that this irreversible procedure is necessary in your case. Insist on a full antibody panel. If it's Hashi's rather than Graves , then you don't need it and should have come off the carbimazole already.

[Fruitandnutcase]

I was always being told that should I relapse once my treatment was finished I would be given rai! I used to say I didn’t want it etc. Even had one bright young spark hold up her thumb and finger and say ‘it’s in,y a little pill’ I said I didn’t want rai because it would kill off my thyroid and I would become hypo. She actually said that that wouldn’t happen.

Anyway, once I was released from the hospital’s care I went along t my GP and said that I didn’t want rai should I relapse could the hospital insist? Nope. Could they refuse to treat me? Nope. So I went home and got on with life.

It’s worth looking for as much evidence to back up your argument from papers etc to show that people are taking carbimazole long term. So stand your ground and good luck.

[humanbean in reply to Fruitandnutcase]

How demeaning that is, to hold up fingers and say that it's only a little pill, as if that might change your mind. It's the kind of thing you'd say to a 2-year-old who won't take their medicine.

[Fruitandnutcase in reply to humanbean]

I know, I couldn’t believe she did it. I found it quite funny in a way. Attractive young girl, long blonde Goldilocks hair, standing there in front of me demonstrating how small the pill was. It was a total waste of her time though. I played the unreasonable toddler back and held my ground.

I thought the worst part was when I told her I didn’t want it as I didn’t want to become hypo was her telling me that once my thyroid had been zapped I wouldn’t become hypo!

I mean, honestly you have to wonder what she was doing during her lecture on the thyroid when she was at medical school, maybe she was off that day.

[humanbean in reply to Fruitandnutcase]

That is appalling!

[purple64]

I agree with fruit and nutcase. I take 5mg of Carbimazole at present and although my thyroid levels are ok, according to the hospital, my antibodies are still high. Had I not asked him to look at the antibody blood test result he wouldn't have checked. I am really not going to go down the RAI route for one reason I already have a virus in my left eye which is being kept at bay with tablets and steroid eye drops and secondly when I asked what happens with the antibodies when the thyroid is killed off the response was " oh it will attack elsewhere probably your eyes" 😱 Really😱 Have no confidence in them since that comment so will go with my own gut feelings when it comes to the time to make a decision but it won't be RAI

[Fruitandnutcase in reply to purple64]

What a dreadful thing to say to you, no wonder you don’t feel confident. I’m afraid I don’t know what the antibodies attack after your thyroid is killed off though - hopefully someone else could give you the answer.

If it’s any help I went totally gluten free about four years ago when I was diagnosed with inflammatory arthritis - I decided yet another autoimmune comdition was one too many.

I started as an experiment to see if it would work but when I tested with a Blue Horizons home fingerprick test three months later my antibodies had reduced so I stuck with it and since then my antibodies have come right down to well below the lower end of the range so nothing would make me go back to eating gluten. It could be that they would have reduced anyway but I’m not prepared to go back to gluten.

[purple64 in reply to Fruitandnutcase]

That's interesting. I might try going gluten free as apparently my levels are good yet the antibodies are still high. I was going to ask you about the antibodies when you went into remission. Were yours still high? At the moment I feel like I'm back to square one, not sleeping , heart racing, tired but restless😤. I've cut out refined sugar for quite a while now so maybe gluten is the next thing.

[Fruitandnutcase in reply to purple64]

When I started my own testing in March 2014 which was six months or so after I went into remission my anti thyroglobulin abs were 180.6 (0-115) and my anti thyroid peroxidase abs were 18.7 (0-34)

In September 2018 my anti thyroglobulin abs were 58 (<115) and my anti thyroid peroxidase were <9 (<34)

Antibodies were never mentioned or tested again after my treatment started. I don’t think that is unusual which is why I started doing my own. I notice that my CRP has dropped too which is good - or I think it is - I’ve got inflammatory arthritis.

It could be that time caused them to fall but equally it could be being gluten free. I don’t find staying gf difficult so I’m sticking with that. I find that I eat a lot less sugar these days too. I don’t think a lot of sugar is very good for you. So well done on doing that.

[purple64 in reply to Fruitandnutcase]

That sounds positive. How do you get on with gf bread🤔 I find it do dry and crumbly it put me off.

[Fruitandnutcase in reply to purple64]

Tend not to eat much bread. It’s a long story but grain based carbs really spike my boood sugars so I tend to avoid them

I’ve found Schar bread is the tastiest although it is a bit expensive. I occasionally buy a loaf make a sandwich and put the rest in the freezer for toast. I find most gf breads, rolls and a lot of biscuits are way too sweet, never mind dry and crumbly like you say.

[Nmaezi]

The result looks like hypothyroidism to me; I don't understand why RAI was suggested.